Lions, & Tigers, & Self Care

About a year ago I realized that my life was a delicate balance of self care, determination, and coping. As I looked around at my friends and family, I began to recognize needs in them that I had always had, but never known how to tackle until I started dealing with a chronic condition. Self care wasn’t just a thing that sick people did. It was a thing that everyone did, in a way, as a preventative maintenance for their bodies and minds.

So, I started a private Facebook group and invited some of my friends to join in on the self care conversation, and then they invited their friends… and now the group is 78 and growing.

From my Petri dish of friends, with their struggles and medical conditions and triumphs and overcoming… I have gathered a TON of self care resources.

And now I want to share those with you, with the world.

Introducing Lions, & Tigers, & Self Care – The Website. You can find us at http://selfcarebears.org.

LTSC’s goal is to provide:

  • Resources for those in crisis
  • Information and strategies for the art and craft of self care
  • Local activities and support groups you can incorporate in your self care plan
  • Tips for motivating your friends, families, and community to join you on your self care journey

I’m adding information as I go, but the site is up for your snooping pleasure.

Get your self care on, people.

Post Script: To my friends and family, as always, this is all dedicated to you. I love you.

My Experience with Online Therapy at Breakthrough.com

Yesterday, I had my first session with a clinical social worker and I was in my pajamas. Instead of sitting in a waiting room surrounded by germ-ridden magazines, dusty wall art, and administrative noise… I was in the comfort of my own bed.

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Breakthrough.com is an Online Therapy service that provides access to mental health professionals via web cam. Sessions are conducted as a video call over a secure video system that you download when you register for the site. Sessions range in cost from $50 to $250 dollars a pop, and many have self-pay options for people without insurance.

Form this point forward, I am going to discuss my personal experience with Breakthrough.com and the mental health provider that I selected. There are multiple articles about Online Therapy, and many different websites that now provide the service, and I think that you, as a person who is reading this now and using the internet, are capable of using a search engine to find information about those sites.

I have Medicare parts A, B, and D. None of that provides mental health coverage. Therefore, I searched for a provider who had a self-pay rate I could afford. Breakthrough.com has a great search-filter set that allows you to winnow down to a list of professionals who will best suit you. I chose a young woman who is a clinical social worker. She’s worked with people who have histories of past trauma and abuse, as well as helping with depression and family issues. Her self-pay rate is $60 an hour. Phone sex actors and actresses make more than a dollar a minute, so I feel like this is an excellent deal.

When I selected her as my therapist, I was given the option of a free, 15 minute consultation. I chose to go ahead and schedule an appointment with her, because I don’t feel like 15 minutes is long enough to get into the things that I, personally, need to get out of therapy. When I scheduled my appointment for 2 PM, she promptly messaged me, using Breakthrough.com’s secure messaging system, to ask if I wanted a 30 or 60 minute session.

Her message to me was polite, upbeat, and made me feel like she was welcoming. She let me know that if I had any questions, she was happy to answer them. I did have questions about what would happen before our session, and if I’d have to fill out paperwork. This was information that I later received in an e-mail from Breakthrough.com, however she provided the information happily. I didn’t feel like I was hassling anyone, and I wasn’t made to feel dumb that I had missed the big, green “TUTORIAL” link on the home screen.

Before my session with A (which is what I will call her), she let me know that I’d have to read some terms and information and also fill out a mood assessment. This information only becomes available 10 minutes prior to your session.

Breakthrough.com Is Beyond User Friendly

I’m web-savvy. I can figure things out on my own. With Breakthrough.com, I didn’t have to figure anything out. I asked, and was given information, and the website does an excellent job of making sure that your appointment will go smoothly. They offer a 15 minute test session where your tech issues get worked out. They check your internet connection to make sure that your session won’t be interrupted or lag. They tell you how to turn on your camera and mic. They show you where to download their secure video software. It’s user-friendly as all get out. I had no issues with the software installation.

The only tech problem that I had at all was caused by my son uploading things online when I had asked him not to. He created lag on my end, and there were 3 instances in which my video call with A froze.

Breakthrough.com Gave Me the Best Therapy Experience I Have Ever Had

I don’t want to gush. I’m not a gusher. However, there is praise due to A, and to the way that Online Therapy works as a whole. Below are some issues that I have had with therapists and other professionals in the past:

  • They don’t start right on time
  • They aren’t prepared for my session and don’t seem focused on me at the start
  • They take care of administrative tasks in front of me, such as billing, insurance calls, etc
  • They answer phone calls during sessions
  • They have to start from the BASICS in our first session and ask standard questions as opposed to actively listening and letting me talk about why I am there
  • There’s too much paperwork… paperwork… paperwork
  • They assume that I will be back and want to work with them
  • Waiting rooms suck
  • Receptionists vary from awesome to rude

None of this was the case with my session with A. Here is what was different about my Online Therapy session:

  • My start time was scheduled for 2 PM. My therapist video called me at 2 PM
  • My therapist used information from the e-mails I sent her prior to our session to break the ice, “You say you’ve been in therapy before…” and seemed prepared to talk
  • Breakthrough.com takes care of all of the paperwork before your start time, and separately from your therapy session. I wasn’t charged to do paperwork, and I wasn’t bogged down by a lot of administrative yuck. My therapist merely took notes in front of me
  • My therapist had her phone accessible at the start of the session, and stated that she was having technical problems on her end and was going to call me. Luckily, the website cooperated and she didn’t have to. I never saw or heard her phone again
  • My Online Therapy session was centered around me. I didn’t have to explain why I was there or justify wanting therapy. I was permitted to dive right into my issues and ramble. She asked reflective questions and showed true active listening skills the entire time. It wasn’t until 30 minutes into our session that she began directing the conversation back to things she wanted to get more information about. And when she asked, she was informed
  • She said phrases like, “if you want to work with me,” and “I’d be excited to work with you on these issues.” At no point did I feel that she was above me. She made no assumptions. She praised me for reaching out to someone, and acted humble about the fact that I had chosen her, and that I wanted to keep seeing her for a bit
  • I didn’t have to deal with a waiting room. I didn’t have to talk to a receptionist to schedule my next appointment. My therapist scheduled my next appointment and I received a confirmation on my Breakthrough.com home screen

Breakthrough.com Allows True Connections with Your Therapist

A, my new therapist, said that I… her meager client, could message her before our sessions with the topics I’d like to discuss. She said that it would give her a chance to look up possible resources for me to use outside of our sessions. She said that if I need her at any time while in crisis, to contact her and she will work with me. She was utterly focused on me and my needs as a human being during our session. Because I was at home, in my comfy bed, I felt so very safe discussing harder topics with a complete stranger. I left the session I had with her feeling like I had done therapy work, instead of going through therapy motions. That is extremely important to me.

Granted, this is my experience with one of their providers. However, I have to speak for those of us who are uncomfortable in office settings, or can’t always make appointments because we don’t feel well, or don’t like to make eye contact. Online Therapy permitted me to have my physical comfort needs met. I didn’t have to look at the screen. I could just listen and talk. She could see me. I could see her. She looked into the camera. I looked to the side. I could fidget. I could take sips of things. I had everything I needed without having to ask for it. It’s tremendous to be disabled or neurodiverse and have access to therapy that makes your environment for you.

Having control over your environment is so important when you’re talking about things that make you feel vulnerable.

Final Thoughts about My Therapist

There is one important thing that A did that no other therapist has done before. She asked what I have disliked about previous therapy sessions in which I’ve participated.

That’s a huge question. We all know I’m a quitter when I’ve decided that something just IS NOT WORKING (for me) and that I bail. I bail hard. I admit to it. I don’t see the point in dragging things out if there is no hope. I’ve left so many therapists.

Why? Well, here is the short list: feeling judged for my relationship style or sexual orientation, feeling like the professional was more focused on how interesting I was than helping me, feeling like the therapist was focusing too much on an issue that I felt was tertiary to the core issues I need to work on, feeling like the therapist had made a decision about something in my life and was exerting their personal opinion in session… etc.

I said all of this to A. She made notes. I told her that I, as a researcher and knowledge-seeker, have been doing my own trauma work and that I am ready to just dive into the deep issues I have from my past. She said she wasn’t sure if that was okay. More than okay. More than okay.

I like her. I hope this works out. Because I surely do like going to her office, aka my bedroom.

Also, I can go to therapy sessions without wearing pants. Bonus.

Payment

This is the thing that everyone really wants to know. I will reiterate that there are mental health providers who don’t require insurance. It isn’t a hassle to not have mental health coverage and the self-pay rates for many are reasonable. Breakthrough.com takes your credit or debit card information when you sign up, and then charges you after your session. It was easy. There was no extra billing to take care of.

Again, minimal paperwork with this site.

Things Breakthrough.com Professionals Can’t Do

They can’t prescribe medication. That’s the biggest thing. And honestly, I don’t go to therapy for medication. I see doctors for medication. I can find psychiatrists who will take mental health recommendations from my doctors if needed. Yet, my neurologist has been managing my antidepressants because she’s my primary prescriber and juggles all of my meds.

They have a long list of Terms and Conditions. As expected. Otherwise, except for the medication thing, I really haven’t seen a hole in what I consider MY therapy needs.

So far, 4 stars for Breakthrough.com and 5 stars for my new therapist.

Online Therapy, Acupuncture, & Dogs

… because why not dogs?

I’m seeing my acupuncturist for the second time today. I still have a bruise on my right hand from my first appointment. However, this is common… according to the internet. Thanks, internet, for making me feel better about tiny, painful needles in my skin.

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I also have an appointment with a new therapist. Before I discuss that, I should get into a bit of history about my art therapist. I loved my art therapist. And I was a bad patient. I poofed. I poofed because she made some comments the last few times I saw her with which I wholeheartedly didn’t agree… and it became something of a pattern. I found myself talking about the same issues over and over, instead of doing the work that was in my treatment plan. I didn’t feel that was productive. The last time I went was right before entering a period of emotional crisis. At that point I decided that, for me, I had gotten everything I was going to get from working with her at that time.

I know it’s incredibly wrong to just stop seeing a therapist and not give them closure, however, it is a service for which I was paying, and I have no insurance, and that deal could only last so long. Basically, it became an untenable situation for me in many ways.

Mind you, I haven’t abandoned self-improvement or therapy all together. I have been doing my reading, and creating art, and expressing myself. I have been trying to implement the plans and strategies that came out of art therapy. I use my Girl Cave as a retreat. I’m sleeping much better.

There is turmoil in my personal life which I have agreed not to discuss openly. That doesn’t mean I won’t talk about the suicidal thoughts, or the self harm I have inflicted upon myself, or the frequency with which I have used crisis and suicide hotline resources over the past few months. It is my belief that it is important not to hide these things away, but rather to throw open the curtains and let the damned sun burn the truth of them into us. I am hurting emotionally and physically.

I am not resistant to therapy in the least. I am resistant to unproductive therapy. I am resistant to judgmental therapy.

This is a good point to get into why I have chosen to seek online resources instead of traditional, in-office therapy. There are several websites that provide access to emotional support online. I have utilized the active listeners at 7cupsoftea on a few occasions. I found the group chat to be more useful than the active listeners themselves. It turns out that active listening is not a skill that everyone has naturally. Active listeners are simply people who have completed a web-based training and are volunteering their time.

Then there are the therapy sites that provide access to professional therapists. I have not used these resources before. The two sites that I looked into when I was performing late-night searches, as you do, are TalkSpace and Breakthrough. TalkSpace has been discussed in the media and on numerous talk shows. I found this to be a turn off. There was also some language in their EULA that turned me off. I can’t pinpoint what it is that made me choose Breakthrough, but that’s what I did.

I have an appointment with a Breakthrough therapist at 2 PM EST today. Actually, she’s a clinical social worker who has worked with families and individuals who have suffered trauma. She had the cheapest out-of-pocket rate while not being a Christian nutter.

I can’t see an overly religious therapist because my relationship style and sexual orientation don’t really mesh well with them. I’d rather be able to get those things out of the way and move on to the real work.

What do I consider “real work”?

That’s a tough question, with even tougher answers. I have past traumas, trust issues, PTSD, and some massive codependency to conquer. Doing these things will help me communicate more effectively, love myself more, and manage my health (mental and physical) more compassionately. See? I have goals. I’m clear cut. But I am so easily distracted by the swirling chaos of diagnoses and external stressors that I never get to the meat of the situation.

I’m at the point where I don’t want to gently wade into these traumatic issues. I’m good at self care. I’m good at knowing when I need to stop certain conversations. (Emphasis on “certain”.) I’m ready to deal with the awfulness in which I am mired.

On to the fun things! DOGS! Well, just one dog. I know this popped up on my Instagram feed (follow me on Instagram for dog, makeup, more dog, and occasionally pictures of knickknacks or medical crap. @niansahc ) but I think that a shout out is worth while.

Here’s my baby, Oliver, and my favourite quote about devoted little dogs for your viewing pleasure:

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10 Indispensables for Those with Chronic Pain and Illness | Psychology Today

“The Proper Pillow Arrangement” is included in this list and it is EVERYTHING.

Source: 10 Indispensables for Those with Chronic Pain and Illness | Psychology Today

Trigeminal Neuralgia – Officially an Underlying Diagnosis for MBHM

It has taken me a while to gather my thoughts enough to sit down and write this. I feel I should dive in and just say it, and then ramble about after. I also feel that just saying it here makes it final and real, and perhaps that is why I have been putting it off.

On November 3rd, my neurologist declared that given my pain history and my response to Oxcarbazepine, that Atypical Trigeminal Neuralgia (TN2) is an underlying cause for my Monster Migraine. The TN2 continually triggers migraine symptoms, and everything keeps cycling, and this is why nothing has been successful.

This diagnosis means a few things. First, it means that I have a reason for my pain. Second, it means that I have a community of sufferers to join and learn from. Third, it means that I have a disease that currently has no cure. Fourth, it means that there are new treatment options open to me that, if successful, may lead to a better quality of life than I am currently living.

And, lastly, it means that I have gone from hoping that my pain will one day end to realizing that my pain is something I will have to manage for the rest of my life.

That last thing has been difficult to process. I have cried. I have been angry. I have acted rashly, or hyper-rationally… or something. I have turned to treatment options I have previously refused because I saw them as too painful or too pointless. I began acupuncture this past Friday and am going to see my acupuncturist twice a week until I see some results. I am going to turn to outside-the-box pain medications.

I have launched my own, personal war on Trigeminal Neuralgia.

I have curled into a ball and hidden under blankets.

I have talked to friends.

I have avoided friends.

I have felt relief.

I started a secret self care group on Facebook for when I have feelings and I need some kind of support. I started writing in a journal. I started falling apart. I started getting my shit together.

I definitely started forgiving myself for some things.

I have a disease, and that makes my head hurt all of the time and fires up ye aulde migraine making machine constantly. Fuels it. Makes it glow red hot.

Cool. So there is that.

“We Did The Thing!” – Self Doubt and Self Care

I wrote the title for this blog enthusiastically and with happy tears in my eyes because I have recently experienced something I want to share with the world. Then, I stared at the screen, started typing, hit the backspace key, typed something else, and stared some more. The truth is that I don’t know how to talk about this in an articulate way. I have expressed parts of the feeling to individuals as I have deemed it necessary, but, ultimately, the emotion is too huge to pin down in a few words.

I am, however, going to try. I think it is necessary for me to talk about it as a human. I think it is necessary for me to talk about it as a woman. I think it is necessary for me to talk about it as an individual with autism. I think it is necessary for me to talk about it as an individual with chronic pain. I will do my best, and I will ramble, but I will be as sincere as I damned well can be.

I don’t trust easily. I’ve never had close humans whom I’ve felt I could tell anything to or whom I felt I could call if I needed support. I’ve never felt comfortable asking for help. I have always stringently avoided inconveniencing people. I have kept up appearances as much as I possibly can. I have forever tried my best to deal with me… myself.

Over the past few years, I have learned the importance of self care, the benefits of therapy, and how to speak to myself more positively. I had not learned, though, how to rely on others for support (or trust others to support) until two weeks ago.

I like to consider myself a fully-formed emotional being who is self-aware and capable of doing grown-up things. Unfortunately, life, which is complicated and often ugly, can sometimes smack a person around and you don’t always behave as gracefully as you should. Sometimes you break the fuck down. Sometimes the world ends. Sometimes things are just bad. Sometimes you end up in a parking lot somewhere and you don’t want to exist. Sometimes you are in such personal crisis that everything seems dark and dreary and hopeless.

It was in such a moment that I learned that other people are more than just social outlets. Apparently, and this is still new so bear with me, other people who are not family or in romantic relationships with me are capable of caring about me enough to want to help me. Other people do things like show up in parking lots with water and chocolate and hugs. Other people offer to meet for ice cream just to talk without wanting anything in return. Other people check in to see how things are. Other people offer beds and coffee and make dinner and out-of-season Christmas happen. Other people share their ups and downs and feel happy when they hear about ups and sad when they hear about downs in return.

These other people are called “friends.”

It isn’t as if I haven’t had friends all my life, but I don’t think I’ve allowed myself to have this level of friendship with other people before. I had to reach one of the lowest points in my life to finally be able to look up and see all of the hands being reached down to lift me up. And there were so many hands, and they all glowed with unconditional love and compassion.

This is where typing becomes tricky, for the tears, they are a’flowing. It has been a long thirty-five years of striving to feel accepted and loved for who I am by ME, let alone other people. I am trying very hard to let the love that I feel for humanity extend to myself. I know that I am a lovable, likable person. What I have never really believed or understood was that other people see me this way, and I am overwhelmed by how truly cared for and supported an uplifted I feel. I genuinely hope that other human beings have felt this feeling at some point in their lives. I want this feeling for everyone.

I am spending this week engaging in radical self care to eliminate some of the disquiet of self doubt that eats away at me moment by moment. I know that to move forward in a positive way with my life, my relationship with my self, and my relationship with others… I have to regain some of the self esteem that has been lost to years of pain.

I will leave you with this. One of my lovely friends, with whom I discuss aforementioned ups and downs and with whom I celebrate and commiserate, and I have a saying. It is silly and motivational and it puts our intention into the world:

“We did the thing!”

It means that what ever it is that we want or need to do is already done and we were successful. We aren’t going to do it. It is done. We aren’t doing it presently. It is done. We did the thing. The thing is accomplished. Wipe of the hands. Be it difficult and stressful or fun, we did it.

Whatever you have to do, it is already done. You did the thing. But you aren’t alone…

We did the thing.

The Handbook for People with Pain + MBHM SURPRISE!

We interrupt this brief My Brain Hates Me hiatus to bring you the following announcement! As a delegate for the Power of Pain Foundation, I’ve received 25 copies of The Handbook for People with Pain,  which is a great (and short) resource guide for anyone living with pain. I’ll be mailing copies to some of my Facebook followers along with a special surprise in the month of November! If you’re living with a painful condition, or know someone who is, please click here to like MBHM on Facebook to learn how you could get a MBHM surprise along with the book! The book is available to download at www.InTheFaceofPain.com!

Get a free copy at http://www.InTheFaceOfPain.com or get 1 of 25 copies personally mailed to you along with a personalized surprise from My Brain Hates Me by checking MBHM out on Facebook!

Taking a Break

Sometimes life gives us so many lemons that we can’t write blog posts. We simply run out of hands!

I’ll be back in November. In the meantime, please enjoy the MBHM Chronic Pain Archives.

Be Well!

My Brain Hates Me

10 Random Facts about My Brain Hates Me

  1. I was born in Richmond, Virginia and I will die in Richmond, Virginia, but I hope to have many miles worn into my feet between those dates.
  2. Having my son was a complete accident, and I’m honest with him about it. I don’t see anything wrong with being honest. I’m also honest with him about choosing to keep him, but that it was touch and go there. I kept him because he started making me nauseous. I kept him because he started affecting me and at that point I wasn’t letting anything happen to him.
  3. The most beautiful person I’ve ever seen probably never existed, or if she did, was probably dead… and she gave me a perfume sample. Life is weird.
  4. I cut my friendship braid out of my hair and gave it to our Danish foreign exchange student when he was leaving, but he didn’t take it with him. I found it int he drawer of a shaving mirror. I thought he would wear my braid as a bracelet and always think of me.
  5. My wedding dress doesn’t fit me right now. I know this because I try it on a few times a year, crinoline and all. I’ve never told anyone this, but it’s a truly random fact about me. For some reason I think it is magical and will let me relive that day. It still smells like that day, but every time I put it on it smells a little more like the years of marriage since.
  6. When my family is sleeping I like to walk around the house using my cell phone as a light and go into rooms we don’t use much, like the guest room or the music room. It feels different in there, less bogged down by living.
  7. I won a medal for French at the Marshall University SCORES Academic Festival when I was in High School.
  8. Christmas decorations are my favourite, followed closely by Halloween decorations.
  9. The only sodas I really like are root beer and Fresca.
  10. I got my first migraine when I was 12 years old. My granddaddy later said to me, in my teens while I was having an attack that, “it’s probably because of all the fat hanging off your skull.” That was one of the last actual conversations I had with him that I can recall before he died in my mid-twenties and that makes me sad.

My Perfectly Okay Codependent Relationship… with My Dog

Meet Oliver:

Terrible doggie

Oliver Wilkes Dogg (Puggle extraordinaire) is my non-human life partner and we have a codependent relationship. We are not ashamed. Oliver is the literal reason that I get out of bed in the morning (around 9 when he wants to go out after his post-breakfast nap.) Oliver is the reason I get exercise (because I have to race through the house telling him not to pee on something before I can get him outside.) Oliver is my napping buddy. Oliver is a source of joy and laughter and unconditional affection. Oliver is terrible in the best way.

Oliver eats our underwear. Oliver unabashedly goes to the bathroom as a means of punishing us for wrongs we don’t know we’ve committed. Oliver carries the skins of his stuffed animal victims around with him. Except Burnie, Oliver loves his dragon, Burnie, and has left him mainly intact.

Oliver eats like a goat… paper towels, tissues, any kind of food, plastic, money hair accessories, or bath accessories. You name it, Oliver has swallowed it whole and lived to tell the tale in the voice that we use to talk for him.

Oliver sleeps like this:

Sleeping terrible doggie

… especially when we’re upset with him.

Or like this:

Doggie tongue

… because he is a master manipulator and uses his powers of puppy-face against us so we don’t kill him.

Oliver is my best friend. When my head hurts, Oliver says, “Mama and I have a migraine,” and he curls up under the covers and naps all day with no complaints. When I’m upset, or having a really bad pain day, he puts himself across my body like a seat belt and keeps me warm and secure. He isn’t afraid of my meltdowns. He doesn’t mind that sometimes I’m not in the mood for his whimsy. He just carries on being whimsical at me until I am in the mood. He licks my feet when they are freezing. He gets his one kiss a day. Petting him makes me feel nice. I have trouble sleeping when he is elsewhere.

I have a codependent relationship with my dog, and that’s okay.

Oxcarbazepine, Botox, & The Cefaly- Which is Working?

My pain levels are wonky to be sure. One day I’m a 5 out of 10 on the pain scale, the next three days I’m a solid 9. Then I’ll have a few 6-7 days. What I do know is that this is a vast improvement in the quality of my life over the period between September, 2014 an August 6th, 2015. I am in no way complaining.

However, I would like to know what is making the magic happen. I’ve been using the Cefaly device for a while now. I’ve been on a larger dose of Oxcarbazepine (or Trileptal, used to treat Trigeminal Neuralgia) for several weeks. And I’m right in the sweet spot of my most recent Botox treatment where the Botox flu and droopy-eyes are gone, and it has not yet worn off.

This is the problem with chronic condition. We’re so eager to try everything that we just want to do it all at once, which makes it hard to determine what is actually working. That leads to being on tons of medications and afraid to stop even just one.

ALL OF THE PILLS! ALL OF THE WEIRD TREATMENTS! GIMME!

Really, I’ll do anything to feel less pain, but it sucks not knowing which thing to credit for better days!

Self-Advocacy, Chronic Pain & Comorbid Chronic Depression

I’m not a doctor. I’m not a mental health professional. I’m one of 14.8 million (NIMH) people suffering from a major depressive disorder in the United States and one of 1.5 billion (American Academy of Pain Medicine) people suffering from chronic pain in the world.

As of this very moment, scientists don’t understand exactly why depression and chronic pain are linked, but the comorbidity of these conditions cannot be denied. Because these conditions are often both present in patients, one treatment strategy alone is often ineffective. To deny the mind and spirit when the body aches is like putting a band-aid on a broken arm and telling us to walk it off. However, many medical professionals are just learning that it is important to pay attention to the psychological effects of their patient’s conditions, and the reverse.

Photo: ALAMY

Therefore, I think it is important to have a conversation about what we, as patients, must do to advocate for ourselves. I discuss my doctors an therapists frequently and candidly because there is nothing shameful about being ill or mentally unhealthy. I also discuss them because removing the stigma will hopefully encourage others to seek much needed treatment even when it is not suggested by their general practitioners.

We tend to think of general practitioners as mechanics. They keep the body running and send us out to specialists to have our engines rebuilt when they themselves are not qualified to do so. What is lacking from general practitioners is a total-body approach to our healthcare. It is unfortunate that vision, dental, and mental health have been divided into separate fields. In fact, it is detrimental to those of us who suffer from chronic anything.

Think about the diagnostic process when something goes wrong with our bodies. General practitioners run through the check-lists of tests an procedures with which they are familiar and only then do they begin referring to specialists, eye doctors, and dental practitioners. Notice that I did not say mental healthcare providers in that sentence. They keep the body running, with little consideration for the mind. This is not to say that doctors don’t send their patients to psychiatrists and psychologists. However, when patients are sent, it is rare that the patient will then undergo in-depth counseling to determine root-cause issues. Typically, patients are sent with a list of symptoms they have discussed with their general practitioner, and the mental healthcare professional will prescribe something and manage psychoactive medication from that point.

This is extremely problematic. Although the chemical causes of depression may be treated, it is unlikely the patient will learn much needed coping skills to battle depression. Face it. We’re a society of instant-gratification loving people. We want pills to fix things. We want treatment to fix things. We don’t necessarily want to spend years in counseling learning how to be more functional emotional beings.

Which brings me to pain and depression. The road to diagnosis with chronic pain is a long, long, long, long road full of bumps and monsters and disaster. This process is harmful to the psyche. Between doctors who don’t know, doctors who don’t care, and doctors who mistreat chronic sufferers… patients develop an adverse reaction to the medical profession as a whole. We don’t trust that doctors know what they are doing. We feel like lab rats. And we feel jerked around. To feel pain and to not feel heard is dehumanizing.

Sure, it’s pretty obvious that hurting all the time would lead to depression. But it’s more than just feeling down about limitations. It’s a chemical process that begins to form a feedback loop in the body from which we cannot escape. When doctors don’t identify that this feedback loops is occurring, the only result is a worsening of symptoms.

As chronic pain and chronic depression persist untreated, they worsen. It’s inevitable. So what can we as patients and we as sufferers do for ourselves?

It’s simple… talk and take action.

Research symptoms. Prepare for your appointments. Consider mood as well as physical symptoms. Think of yourself as one whole being and force your doctor to see you as such. Ask questions about side-effects of medications. Talk about sadness, anxiety, crying, feeling alone or trapped with your doctors. Seek out mental healthcare and make sure that all of your healthcare providers are talking to one another. Treat your body and mind as two parts of one machine and get total-body care. Don’t wait for your doctor to tell you what to do. Do it and tell your doctor.

You are one body, mind, and spirit. These three things work in harmony to keep you going every day. I charge you with the care and maintenance of your total body. Demand that your doctor treat you the same way, and if they won’t, find a doctor who will. It is okay to seek proper treatment and it is okay to take your healthcare into your own hands. You are not at the mercy of the medical community. You are completely in charge of your treatment and you deserve the best they can offer.

But they don’t always offer, and you need to be aware of that.

Photo: ALAMY

6 Things Every Chronic Pain Sufferer Wants to Hear

WordItOut-word-cloud-1097862Living with chronic pain takes a major toll on a sufferer’s personal life. Friends, family, and other kinds of social support are vital to the quality of our lives. Cancelled plans, physical limitations, undone chores, and feeling like a guinea pig are all pretty depressing. But the one thing that can instantly make us feel better is compassion from another human being.

If you know someone with chronic pain, there are simple ways to show them that you care and that you are there for them. Here are six things that anyone with chronic pain would love to hear.

  1. “I believe you.” Chronic pain sufferers have weird stuff wrong with our bodies and it hurts. We’re human beings in pain. Having friends and family tell us that they believe us is the most supportive thing we could ever hear.
  2. “Rescheduling is absolutely okay!” When plans have to be cancelled because someone isn’t feeling well, that person feels guilty. Chronic pain sufferers live with an indescribable amount of guilt, and when that pain affects someone else in a negative way, that guilt cranks up to 11. Telling us that it’s okay that we have to reschedule plans makes us feel like our condition has less of an impact on your life.
  3. “Let’s hang out at your place this time.” Bathing, medicating, getting dressed, and attempting to look human are exhausting enough… and then we have to leave the house! Bars, the movies, restaurants, and parties can have elements that make our condition worse. Take the pressure off by planning a quiet evening at our place. Pajamas and movies? YES PLEASE!
  4. “I have some free time this week and I’d like to help you with shopping/ laundry/ cooking/ chores.” Getting things done can be tough when we hurt! Think about a time you had a cold. Did you accomplish much during that time? Chronic pain sufferers face many challenges that can prevent us from doing the most basic of chores. We probably won’t ask for help, but if you’re offering…
  5. “It’s not your fault.” Did I mention our guilt? Many chronic pain sufferers attend therapy to cope with the negative feelings surrounding our conditions. But the feeling that our condition rules our lives, and the lives of those closest to us never really goes away. Reassure us but reminding us that you know we didn’t choose the pain and we don’t deserve the pain. 
  6. “You are not a burden.” Being the friend or family member of someone with chronic pain may mean that you’re pulling double duty in many areas of your life to help us with ours. We know that we’re a lot of work, but we constantly worry that we’re resented. Reminding us that you do things because you love us goes a long way towards helping us feel less like a weight on your shoulders.

Trigeminal Neuralgia & a Better Day

I woke at 5:30 this morning. As always, I stayed very still as consciousness slipped into my body. As always, I waited for the pain to wake up and spread through my head like a hot poker. The pain wakes up 1-2 minutes after I do. Some miracle of body chemistry keeps me from feeling anything for a moment or so. This moment is both my favourite and most hated time of day. For a moment I am pain free. For a moment I am terrified that the pain will start and be worse than it has been before. For a moment… I am frozen.

This morning, as I waited for the pain to burn through me, I thought about how my pain has aged me. I thought about the bags under my eyes. I thought about my skin and my hair that falls out in clumps. I thought about the weight all of the stress and medication have caused me to gain. Then the pain hit, starting from my left eye and radiating outward, across my forehead and scalp, down my neck, into my shoulders. It’s an evil feeling. It’s like being afraid of the bogeyman, arm hairs on end, knowing he’s real but also knowing no one can see him.

But this morning my bogeyman was less frightening.

It has been approximately 10 months since I experienced anything close to a decent pain-level day. It has been exactly one month since I began taking medication intended to rule out Trigeminal Neuralgia (TN). Today, my pain level is a 6. This past Thursday, I experienced a level 5 pain day.

I can’t express how amazing this is.

My neurologist was not able to rule out type 2 TN at our consultation last month. Her only solution was to put me on the medication most commonly used to treat TN, Oxcarbazepine (OXC) and  wait for improvement. OXC, also known as Trileptal, is an anti-seizure medication. My dosage started at 300 mg per day and was then increased to 600 mg per day two weeks later.

Granted, I received a Botox treatment the same day I began taking the medication. It is highly possible that the Botox is the reason for my random better pain level days. Two good days out of an 8-10 month period is not a trend. It is an anomaly.

A very welcome anomaly.

Having a better day, not a good day, but a better day makes me want to accomplish things. Unfortunately, the best way for me to keep my Monster Migraine tamed is to rest and avoid over-exerting myself. A better day merely means a more restful day.

A very welcome anomaly.

Lights Out, MONSTER BRAIN Shirts!

Lights Out, MONSTER BRAIN Tee

You’ve been asking for them, now they’re here! Get the new Lights Out, MONSTER BRAIN tee, tank, or hoodie now available in BLACK. This shirt is dedicated to all of the light-sensitive chronic pain sufferers. But you don’t have to have a neurological condition, migraines, or psychological distress to buy a shirt, this design looks great on everyone!

Support My Brain Hates Me and help my brain hate me less. Get yours today!